COVID-19 Presents Both Challenges and New Insight for Autism Care

The effects of COVID-19 have been far and wide. Social distancing and stay at home orders have completely changed nearly all of our daily lives. For most individuals, staying physically apart and adjusting to a new routine can be challenging, but overall feasible. However, for those individuals with intellectual developmental disorders (I/DDs) such as autism, this sudden change in routine can cause major disruption and unrest. Not only have the effects of COVID-19 shattered the much-needed routines and typical daily structure of individuals with autism, but it has also altered the way providers deliver care to I/DD communities.

Canopy Children’s Solutions has seen the pandemic’s impact on care and therapy first-hand. The Mississippi-based nonprofit organization provides a multi-faceted system of behavioral health, educational and social service solutions for a variety of challenging issues faced by children in their community. Canopy serves more than 5,000 children each year through specialized education programs, outpatient counseling, autism solutions and much more. With the majority of Canopy’s services following a direct service delivery model, including autism services, physical distancing under COVID-19 poses its own set of challenges for the organization and its clients.

“Individuals with autism are people first, and just like any person, crisis affects them in different ways,” Jim Moore Ph.D., BCBA-D, LBA, Canopy Children's Solutions Director of Autism Services said. “We have noticed an increase in stereotypic behavior, but the range of impact is as diverse as the children we serve. Regardless, our team is working to ensure the individuals we serve continue to get the care, guidance and support they need from us during this time.”

Autism is a complex neurodevelopmental disorder that impacts 1 in 54 children. In general, autism impacts language, communication and social behavior. Some children may also show repetitive, restrictive patterns of behaviors and interests. Symptoms can vary widely, as each child with autism may display a unique pattern of behavior and level of severity, from low functioning to high functioning.

In terms of services and therapy, Applied Behavior Analysis (ABA) has been referred to as the “gold standard” of autism treatment by both the United States Surgeon General and the Centers for Disease Control Scores of organizations. The two main types of ABA therapy for autism, comprehensive and focused, both center on highly individualized assessment of a client’s behavior, including strengths and areas of improvement in order to develop a tailored treatment plan to meet the individual’s unique needs. The comprehensive model of ABA, which is the model employed at Canopy, involves mostly one-on-one, face-to-face therapy for up to 40 hours per week. Under COVID-19 standards, these therapies look a little different.

“The biggest change in our care delivery has been a pivot from a direct service delivery model to more of a consultation model,” Moore said. “We are continuing to alter and adjust how we provide services right now, which definitely varies from person to person.”

Prior to COVID-19, Canopy used a tiered service delivery model in which Registered Behavior Technicians (RBT©) provided direct therapy under the supervision of a Board Certified Behavior Analyst (BCBA©). The BCBA would assess the client’s behavior, write the individualized treatment plan, and then train and supervise the RBT© in the implementation of the plan. Now, parents find themselves stepping into the role of therapist using careful guidance through telehealth. Through this virtual platform, providers can deliver care using a tablet or other electronic device instead of meeting the individual in person. Although third-party payers in Mississippi have allowed service delivery through telehealth, none will allow an RBT© to render these services, leaving the parent on the front line.

“For some parents, the main focus of these telehealth services has been general behavior management,” Moore said. “Many of our experienced parents have shown the ability to implement up to two hours per day of their child’s treatment plan. Overall, however, COVID-19 has significantly reduced the amount of treatment each of our clients currently receives.”

Without face-to-face interaction and treatment provided directly from BCBA therapist, maintaining skill progression, communication development and other behavioral or social practices can be challenging for individuals with autism. Not to mention the effects sudden change in routine and day-to-day schedule can have on an individual with autism. However, Moore said they are still seeing plenty of goals and milestones being met from afar. With the proper support from loved ones and guidance from Canopy professionals, successful therapy is still very much possible during this time.

“Our families have actually seen amazing progress in their children,” Moore said. “We have had a number of children become toilet trained during this crisis and have even given us their first spoken words. I watched a video of session in which a 4-year-old boy read to his mother. Two years ago, this same boy did not speak.”

In addition to the hard work and dedication of both the families and the individuals who seek Canopy services, Moore noted the impressive initiatives taken by the team. Since many of the providers had not leveraged a virtual care platform before the virus outbreak, the team had to quickly adjust as telehealth becomes essential to providing services.

“Each of the BCBAs stepped up to receive as much training as they could find,” Moore said. “Now that we are five weeks into this service delivery model, our BCBAs seem like old pros at running telehealth. I have sat through many sessions, and I continue to be inspired by their passion and dedication.”

We applaud all organizations continually refining their workflows and care delivery amid this unusual time. Adjusting to sudden change is not any easy feat, especially when positioned to quickly adapt care delivery and treatment plans for the individuals they serve. Canopy professionals and clients are no exception.

“Overall, I would say the most encouraging result of this crisis has been the way our families and clinicians have embraced the challenge,” Moore said. “They already have a tremendous burden on them, but so many have stepped up to embrace this ‘new normal’ in order to help their child continue showing progress.”